#86769 12-27-2008 08:55 PM | Joined: Dec 2008 Posts: 16 Member | OP  Member
Joined: Dec 2008 Posts: 16 | I was diagnosed October 28, 2008 with SCC Base of Tongue. As each test and call came, the news continued to spiral downhill. Final diagnosis is SCC Grade 2 T4 N2 M1, inoperable and incurable. Until October 20th, 2008 (the date of biopsy) I had "never" been hospitalized. I am 68 and considered myself in very good health. I was still working until this diagnosis. I have never smoked, nor do I drink. My oncologist feels that with the advanced stage of the SCC and the metastasis in my chest, I have only months....maybe 2 years max, if I'm lucky and beat all the odds. I have received 2 rounds of Taxol & Carboplatin chemotherapy and will receive another on January 12, 2009. Doctors are still undecided whether or not radiation will be added to my treatments. CT Scan will be done January 5, 2009 to determine whether or not the tumors are shrinking. Then the decision will be made about the radiation. I am interested in hearing from anyone with similar advanced stage SCC diagnosis and their prognosis.
CG to H, 68 yr male, DX 10/27/08 w/BOT, Grade 2, T4/N2/M1 (neck, lung, midsternum) stage 4C/inoperable & incurable at this point as it is considered systemic. Dec 08 - Feb 09 had 7 treatments of chemo (taxol & carboplatin). 9/10/09 DX w/recurrence, MRI on 9/17/09. I STILL FEEL & LOOK GREAT :-)
| | | | | Joined: Dec 2008 Posts: 16 Member | | OP Member
Joined: Dec 2008 Posts: 16 |
CG to H, 68 yr male, DX 10/27/08 w/BOT, Grade 2, T4/N2/M1 (neck, lung, midsternum) stage 4C/inoperable & incurable at this point as it is considered systemic. Dec 08 - Feb 09 had 7 treatments of chemo (taxol & carboplatin). 9/10/09 DX w/recurrence, MRI on 9/17/09. I STILL FEEL & LOOK GREAT :-)
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Bob, welcome to OCF. Im sorry to hear of your prognosis. Have you gotten a second or third opinion? The founder of this site, Brian Hill had stage 4 oral cancer. His inspiring story is available to read on the main OCF pages. Please ask questions there are many members who can give you advice and support.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | Sorry to hear of the report you have been given. Just remember - a prognosis is an opinion and many have lived well beyond all hope ever given them and done well ... Ultimately we all have our time on earth and when it comes to an end, it is up, with or without a diagnosis of any kind.
It is nice to meet you, I just wish it was in another place and for another reason .. but while you are here, feel free to ask away and we will all be here to support you as we can.
God bless.
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
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"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Agreed that it would not hurt to get another opinion. There have been many threads on this board where patients have found a new treatment, different treatment or clinical trial. Tom Roussel would be one who is dealing with metastasis to his liver through a clinical trial.
Doctors give their "best guess" as to prognosis, but they are not God (even if some of them think they are!). Welcome to the Board, and we will do all we can to help you.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Bob,
I live not far from you. If you haven't already, I would get a second opinion from Stanford or UCSF. Getting treatment at a comprehensive cancer center is your best hope.
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: Dec 2008 Posts: 16 Member | | OP Member
Joined: Dec 2008 Posts: 16 | Gary - thank you so much for the quick response to my posting. It does help to be able to chat with those that have gone through or are currently going through, the same thing as I am. Needless to say, it brings life as you know it to a stand still.
I did meet with the Tumor Team at Stanford Cancer Center in November for a second opinion, confirmation of the diagnosis and their treatment recommendations. Everything I already had been told was confirmed and they suggested that radiation be held for now. Since it is considered systemic and very aggressive at this point they said we needed to go after it aggressively with chemotherapy. If there is response from the chemo and the tumors shrink, then they would discuss radiation.
CG to H, 68 yr male, DX 10/27/08 w/BOT, Grade 2, T4/N2/M1 (neck, lung, midsternum) stage 4C/inoperable & incurable at this point as it is considered systemic. Dec 08 - Feb 09 had 7 treatments of chemo (taxol & carboplatin). 9/10/09 DX w/recurrence, MRI on 9/17/09. I STILL FEEL & LOOK GREAT :-)
| | | | | Joined: Dec 2008 Posts: 16 Member | | OP Member
Joined: Dec 2008 Posts: 16 | Thanks for the reply Donna - We did go to Stanford in November to get a second opinion from the Tumor Team there. They didn't give us any more hope about treatment for advanced SCC than we already had been given. It was at least helpful to know the diagnosis was correct and nothing else or any tumors had been missed in the scans, etc. Time is of the essence and there's no room for error as he is already in the last stage of the last stage (4c).
Hope you are doing well and Happy New Year to you.
CG to H, 68 yr male, DX 10/27/08 w/BOT, Grade 2, T4/N2/M1 (neck, lung, midsternum) stage 4C/inoperable & incurable at this point as it is considered systemic. Dec 08 - Feb 09 had 7 treatments of chemo (taxol & carboplatin). 9/10/09 DX w/recurrence, MRI on 9/17/09. I STILL FEEL & LOOK GREAT :-)
| | | | | Joined: Dec 2008 Posts: 16 Member | | OP Member
Joined: Dec 2008 Posts: 16 | Thanks Rita - I am going to remain optimistic. That's all I have left to hang on to. It's just so hard to understand that I was walking around in such an advanced stage of cancer and had no symptoms. Not even weight loss. The Stanford Tumor Team was also surprised at my health at this point. It is unusual for someone to be non-symptomatic at this late stage of cancer.
CG to H, 68 yr male, DX 10/27/08 w/BOT, Grade 2, T4/N2/M1 (neck, lung, midsternum) stage 4C/inoperable & incurable at this point as it is considered systemic. Dec 08 - Feb 09 had 7 treatments of chemo (taxol & carboplatin). 9/10/09 DX w/recurrence, MRI on 9/17/09. I STILL FEEL & LOOK GREAT :-)
| | | | | Joined: Dec 2008 Posts: 16 Member | | OP Member
Joined: Dec 2008 Posts: 16 | Thanks Christine - I am going to read Brian's story when I finish this reply to you. So far, I haven't found anyone with the late stage that I have, although I'm sure there are many. I would love to read their story and outcome. Is there any easy way of finding/searching for people on the site that are in the same stage as I am? We did get a second opinion from the Stanford Tumor Team.
CG to H, 68 yr male, DX 10/27/08 w/BOT, Grade 2, T4/N2/M1 (neck, lung, midsternum) stage 4C/inoperable & incurable at this point as it is considered systemic. Dec 08 - Feb 09 had 7 treatments of chemo (taxol & carboplatin). 9/10/09 DX w/recurrence, MRI on 9/17/09. I STILL FEEL & LOOK GREAT :-)
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